I feel like the odd one out...

[Starling Cloud]

I never used to... but recently I've started to feel inwardly angry when I try to talk about mum and people say... 'just get some help in' and it seems as if that's what so many people do and it's really straightforward for them. My friend's mum, when she began to get confused, willingly went to the doctors, had brain scans and tests and then someone visited her to discuss all the help she could get and she has all sorts of support now. Some people talk about their relatives going into care... as if they just say to them... I think you need to go into care now... and they go!

This is not the situation I am in. My dad is very frail after a series of strokes and mum has had some kind of dementia for years but I can not get them to discuss this with a doctor. I tried some time ago to get the doctor to see mum because I was worried about her, but I told him he absolutely could not tell her that it was my idea or that it was to check for dementia because she would respond extremely badly. He didn't seem to believe me. He thought I should be able to just get my mum to go to a doctor and didn't understand that I couldn't. He agreed to look at her with a view to gaging whether she had dementia when she came in for a different appointment about diabetes. As soon as he asked her about her memory, she stood up, refused to have any more to do with him and left. It was a last resort, I'm not normally someone who would try to do something like that... I was desperate for her to get some medical support because I was having to watch the awful decline with both of them refusing diagnosis or help.

'just get some help in' ha... hysterical. As if I haven't tried that. How on earth do you get help in if your parents don't want it and wouldn't let anyone through the door in if you arranged it? Mum no longer understands how to go to the toilet, a lot of accidents happen. My dad is incredibly frail, he can barely stand up since losing his strength in one side and his sight after the strokes. It is very difficult for him to manage this. I help of course I do. But I can't always get there or stay for long. Sadly I'm alone and not very wealthy so I have to work. Mum doesn't even want me to wash her let alone someone she doesn't know. It took me 4 years to get her to let me wash her hair and only recently she has allowed me to help with her toilet issues. I understand this. If I was in mum's situation, I'd hate it all too. Mum was always very strong willed - bossy - a woman in control. She wouldn't go to doctors even before this all began.

The problem is trust. And as far as mum is concerned her trust of social services was blown out of the water and I don't know how to get her to trust them again or to trust anyone coming into her home.

I used to have a brother who had downs syndrome and very severe autism. He was also in a wheelchair because of a heart-lung problem that made him too frail to walk. My parents cared for him from the day he was born and we all loved him very much.
You needed to understand autism to understand him (my dad is also autistic). He hated 'fussy things' in his bedroom, so he wouldn't have curtains, would pull them down, wouldn't have decorative things (rugs, pictures on the walls, wallpaper etc.) - we used to try to make it look nice for him but soon realised that what looked nice to him, was very bare, a clean, empty space!! His favourite pastime was to watch his Disney videos (even when we all stopped watching videos and began with DVDs and then downloads, he would only watch an old video). He had a special cup. There were lots of quirks that he liked. At one point, mum and dad - after caring for him alone for twenty years, decided to get someone from social services to come and spend some time with him too to get them some respite care. Not often, just now and again. A very young girl arrived, who didn't seem to understand that my brother couldn't walk or was autistic. Without saying anything to my parents, she reported them saying he had a bare room and therefore wasn't being cared for and he didn't get to walk, he was only ever in a wheelchair (he couldn't walk!!) - Luckily when a tribunal was called, so many professionals and experts who had known him all his life stated that my parents were in no way not caring for my brother.
The knock-on effect?.... My parents sold their home and moved to a different county they were so terrified of losing my brother. The stress landed mum in hospital after she collapsed. Soon after the move, my brother had a heart attack and despite my parents resuscitating him, he died on the way to the hospital, mum started behaving strangely after this, the beginning of dementia and dad had the first of many strokes.... So now... I say, let's get a diagnosis and some support for you and they say they would rather die than trust social services or anybody else. Mum thinks someone would report that she was 'going doolally' (this is her term definitely not mine) and take her away or force helpers she didn't want on her.

I feel terrible. I am watching them get frailer and mum more and more confused. I am on my own. All anyone ever says to me is 'get help in' I don't know what to do. Does anyone else find the 'getting help in' advice just impossible to do? Does anyone else care for people who won't allow any kind of help or even a diagnosis?

 

[Jaded'n'faded]

Many older/frail people and people with dementia have a fear of SS in case they get 'found out' and subsequently carted away to the mad house... (forgive the terms - they fit with your mum's idea of going doollally...) In your parents' case, on top of that, they have the past experience with your brother which I imagine they will never get over. (Understandably.) So I can easily see how this is all going to be very difficult. Short of cloning yourself and doing shifts, I'm not sure what to suggest.

The thing is, although you're managing to keep things together for them, you know it's all coming to crisis point. Something Bad is going to happen - probably a fall, or a further stroke, or some household accident that forces the situation and social services will get involved whether they want it or not.

A few practical points: do you have PoA for them both? If not, could you get it? Perhaps you could use their hatred of SS to persuade them - 'if something happens to one of you and there is no PoA, SS will take over and decide what happens to you...' Stretching the truth a little, but not entirely!

If you can get/do have PoA, you could engage a carer. My suggestion would be to introduce this person as your friend (no uniform!) and for them to go at the same time as you a few times, (to 'help' you!) then take it from there.

If they would be LA funded (savings below £23,500 each) the problems are bigger as to get them any help you'd have to ask for a SS needs assessment first. (And a financial one!) Obviously that's not going to work - I imagine they would not let such a person in!

Final, desperate idea: you can actually dob them in to social services saying their situation is a safeguarding issue. Again, they may refuse to co-operate but SS do have to act on such reports. You could also write to your mum's GP detailing her increasingly random/unpredictable behaviour and express your concerns.

Yours is a very difficult situation. Do keep postng here - I'm sure others will be along to offer better suggestions than mine...

 

[Sarasa]

A warm welcome to Dementia Talking Point @Starling Cloud. A lot of us have had problems trying to persuade a parent to engage with doctors over memory loss, but I can see that you are in a trickier situation than many of us due to your parent's difficult times they had regarding your brother.
@Jaded'n'faded has some good ideas, and you can download the Lasting Power of Attorney forms here if you haven't already got that sorted.
I also think it might be a good idea to talk to the Support Line on 0333 150 3456 or email dementia.connect@alzheimers.org.uk.
From what you've said it sounds like your parent's needs are now too great for one person to help them with, specially if you don't live with them and/or you have no other support from friends or family members.
Do keep posting, this place is very friendly and supportive and even if we can't directly help at least you will feel you are not alone in the difficult situation you find yourself in.

 

[Andy2]

Hi, i am new to the site, and turned to this forum for exactly the same reasons as you. My mother will not allow me and my sister to help with any domestic chores, always complains she never goes out, even though we constantly try to get her out. she will not let us change the bed even though it is soiled because as far as she is concerned she does it every Friday but she does not, we would gladly get someone to help even though we want to do it ourselves, but she is adamant no one is coming into her home, abusive and calls us liars. after a couple of minutes on the site, i saw a common pattern emerging with the illness, we felt guilty as though we were missing something as everyone seemed better than us at caring, but i think we should cut ourselves some slack, all of us have been put in charge of a terrible illness, some people are a little bit further along the line. keep looking at the forum and it begins to make sense, all the best keep going. we are 4 years into the diagnosis.

 

[Starling Cloud]

Thank you so much for replying. I just had a massive need to vent and didn't know how to do it!!
I actually think pretending (I hate this sort of thing, but I'm desperate) someone is a friend and perhaps trying to get them to have a coffee with me and mum if I could arrange it, a number of times until mum trusted them and then, she may let a friend in. I'm finding I get further if I talk about having a companion around than if I talk about carers. When my brother was tiny and mum and dad were trying to get early retirement to care for him, a lovely girl came and stayed and cared for him until they got home from work. They stayed in touch but I can't find her details, I know mum has them but if I ask for them, she will probably be suspicious and not help. If I can track her down, I know that if she visited mum for a chat 'out of the blue' and discussed mum getting visits from her friends. She could recommend someone to come around for a chat and a coffee initially regularly, mum might go for that. Because it's all about trust. Strangers... she doesn't trust them. And the girl who cared for my brother when he was tiny for a while, went on to go into working for the care system. So I'm sure she would know someone. My biggest fear (as it was me who got them to get some respite care for my brother, so imagine how bad I feel about that) is if I manage to get someone through the door and then they are in any way untrustworthy or let them down. I have managed to bring them around to a gardener starting this spring... this is really important, if I find someone who they like and befriend they are more likely to accept further help. If I get it wrong it could make everything ten times worse.

 

[canary]

Hello @Starling Cloud and welcome to Talking Point.

I think that the position you find yourself in is actually more common than not. There are some people with dementia who will happily agree to see doctors and when you suggest help will think this is a good idea, but they are very much the minority.

When you talk to people who have no experience of dementia their perception of this disease is of someone who is just getting forgetful, but that is just the tip of the iceberg - their whole though processes become skewed. There is a very common, though little talked about, symptom called anosognosia, which means that you lose self awareness and are unable to understand that you have something wrong with you. People with this are certain that there is nothing wrong with them and get very upset at the suggestion that there might be, so they refuse to see a doctor and/or refuse help or advice. Combine this with their memory loss and they become convinced that they are still doing everything that they used to, despite evidence to the contrary.

They also find it increasingly hard to plan things and make decisions, so their default answer is almost universally "NO". As another member on here succinctly puts it - if you wait for a person with dementia to agree, you will wait for ever. It is no good trying to reason with them, encourage them to plan for their future, or agree to get extra help because they are simply unable to do this.

Dont try and discuss things with them and get them to agree. You have to be sneaky, go behind their backs and use subterfuge and "love lies" to get things done. Get help in for them using any cover story that may work and be prepared to "apologise" for "forgetting" to tell them.

This link might help you

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Starling Cloud]

Thanks Sarasa, and Canary some good links there and yes... I have learned the hard way that I am going to have to use lateral thinking and fib basically, which I hate but it seems to be the only way. I sometimes wonder if my own anxiety at the situation is underestimating dad's ability to care for mum. In a way, his autism works as a positive because he likes structure and routine, so he has a routine for them both and it works quite well, As long as I get here to wash their bedding (secretly haha) and hoover, they seem to keep on top of more than I expected (loos are always clean house isn't as messy as you would think because dad's routines mean that nobody ever does anything very messy). I am trying to get them into washing with the special waterless foam that I have discovered. My biggest worry is mum going to the toilet. I've managed to get her into wearing black pull on nappy pants which she likes (because they are black and look more like pants than nappies). That has made a difference. But she doesn't really understand the toilet now, she does in that she goes to the toilet, but then forgets what to do when she is on it. So I have to get something worked out there. I have to get dad to understand that mum is going to get worse, she won't simply carry on as she is. I want to get my dad to see that it is far better to have a plan of action in place, something that they both want. To plan that now and not leave it until something awful happens. I am working at it slowly. I have to be really careful not to say the wrong thing and wreck all the work I'm doing to get them trust people again. Finding out about anosognosia through Canary's post is an eye opener!! That has to be it with mum. Because I kept thinking 'how can she not know something is wrong, she must know... but anosognosia would totally explain it.

 

[Andy2]

it sounds like you have a plan, it may not go wrong, if you do not try it you will not know, all the best

 

[Starling Cloud]

Hey Andy2 well you know, what's great about writing here is... I didn't know I had a plan hahaha, it's only sort of formulating while I'm here writing about it all. I felt really upset when I put my first post up. But I'm actually thinking I do have a plan now... might not work... but then I have to think of a different one!!!!!